Mariska G. Oosterveld-Vlug

Comparison of Site of Death, Health Care Utilization, and Hospital Expenditures for Patients Dying With Cancer in 7 Developed Countries

IMPORTANCE Differences in utilization and costs of end-of-life care among developed countries are of considerable policy interest. OBJECTIVE To compare site of death, health care utilization, and hospital expenditures in 7 countries: Belgium, Canada, England, Germany, the Netherlands, Norway, and the United States. DESIGN, SETTING, AND PARTICIPANTS Retrospective cohort study using administrative and registry data from 2010. Participants were decedents older than 65 years who died with cancer. Secondary analyses included decedents of any age, decedents older than 65 years with lung cancer, and decedents older than 65 years in the United States and Germany from 2012. MAIN OUTCOMES AND MEASURES Deaths in acute care hospitals, 3 inpatient measures (hospitalizations in acute care hospitals, admissions to intensive care units, and emergency department visits), 1 outpatient measure (chemotherapy episodes), and hospital expenditures paid by insurers (commercial or governmental) during the 180-day and 30-day periods before death. Expenditures were derived from country-specific methods for costing inpatient services. RESULTS The United States (cohort of decedents aged >65 years, N = 211,816) and the Netherlands (N = 7216) had the lowest proportion of decedents die in acute care hospitals (22.2.% and 29.4%, respectively). A higher proportion of decedents died in acute care hospitals in Belgium (N = 21,054; 51.2%), Canada (N = 20,818; 52.1%), England (N = 97,099; 41.7%), Germany (N = 24,434; 38.3%), and Norway (N = 6636; 44.7%). In the last 180 days of life, 40.3% of US decedents had an intensive care unit admission compared with less than 18% in other reporting nations. In the last 180 days of life, mean per capita hospital expenditures were higher in Canada (US

Changes in the Personal Dignity of Nursing Home Residents: A Longitudinal Qualitative Interview Study

21,840), Norway (US

Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries

19,783), and the United States (US

How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals With Mild to Moderate Dementia

18,500), intermediate in Germany (US

Death with dignity from the perspective of the surviving family: A survey study among family caregivers of deceased older adults

16,221) and Belgium (US

Nursing home staff’s views on residents’ dignity: a qualitative interview study

15,699), and lower in the Netherlands (US

Relating cause of death with place of care and healthcare costs in the last year of life for patients who died from cancer, chronic obstructive pulmonary disease, heart failure and dementia: A descriptive study using registry data:

10,936) and England (US

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries

9342). Secondary analyses showed similar results. CONCLUSIONS AND RELEVANCE Among patients older than 65 years who died with cancer in 7 developed countries in 2010, end-of-life care was more hospital-centric in Belgium, Canada, England, Germany, and Norway than in the Netherlands or the United States. Hospital expenditures near the end of life were higher in the United States, Norway, and Canada, intermediate in Germany and Belgium, and lower in the Netherlands and England. However, intensive care unit admissions were more than twice as common in the United States as in other countries.

How do treatment aims in the last phase of life relate to hospitalizations and hospital mortality? A mortality follow-back study of Dutch patients with five types of cancer

Background Most nursing home residents spend the remainder of their life, until death, within a nursing home. As preserving dignity is an important aim of the care given here, insight into the way residents experience their dignity throughout their entire admission period is valuable. Aim To investigate if and how nursing home residents’ personal dignity changes over the course of time, and what contributes to this. Design A longitudinal qualitative study. Methods Multiple in-depth interviews, with an interval of six months, were carried out with 22 purposively sampled nursing home residents of the general medical wards of four nursing homes in The Netherlands. Transcripts were analyzed following the principles of thematic analysis. Results From admission onwards, some residents experienced an improved sense of dignity, while others experienced a downward trend, a fluctuating one or no change at all. Two mechanisms were especially important for a nursing home resident to maintain or regain personal dignity: the feeling that one is in control of his life and the feeling that one is regarded as a worthwhile person. The acquirement of both feelings could be supported by 1) finding a way to cope with one’s situation; 2) getting acquainted with the new living structures in the nursing home and therefore feeling more at ease; 3) physical improvement (with or without an electric wheelchair); 4) being socially involved with nursing home staff, other residents and relatives; and 5) being amongst disabled others and therefore less prone to exposures of disrespect from the outer world. Conclusion Although the direction in which a resident’s personal dignity develops is also dependent on one’s character and coping capacities, nursing home staff can contribute to dignity by creating optimal conditions to help a nursing home resident recover feelings of control and of being regarded as a worthwhile person.

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data

OBJECTIVES Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. DESIGN AND METHODS To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. CONCLUSION Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes.